Participants’ mean age was 61.8 years (standard deviation [SD], ± 10.87) at the time of cancer diagnosis. Most participants (80%) were married, and 40% of the focus group participants reported being retired or disabled at the time of the interview. Half (50%) of the participants reported a family household income below $15,000 annually, and 40% of them with education higher than high school. The two most common chronic comorbidities reported were: hypertension (80%) and diabetes (40%), in which all the participants who reported these conditions indicated they were diagnosed before the hurricanes. All participants started their cancer treatment before hurricane Maria, and 40% said that their treatment was interrupted (or delayed).
Analysis of the focus group identified (a) barriers related to their cancer treatment, (b) facilitators related to their cancer treatment and (c) treatment experiences during the hurricane, the most discussed themes.
Barriers:
Basic needs and services. Basic needs include an array of services such as: access to food, access to health services, access to shelter, among others. A lack of basic services has been identified as a common theme among participants of this study. The study participants commonly mentioned a lack of preparation at the time of the hurricane. Most of them were only prepared with canned food and water, some of them had a gas stove, and very few had electric generators or water cisterns.
“As for my condition well that caught us by surprise, because after the operation, remember that I got operated on September 8th. During Maria, I was discharged from [hospital] the same day that Maria came.” – BC participant.
Study participants also recommended that PR becomes more prepared in terms of electricity, switching to renewable energy or other options, and for the health institutions in the island to get prepared with water cisterns and electric generators and the cities to have mitigation plans and collaborating committees. The participants recognized that there is little education on how to prepare for a hurricane and how to manage cancer patients during an emergency in PR. A participant mentioned: “But there’s no type of education in terms of the condition” — BC participant.
Health Facilities. Health facilities services in PR were majorly disrupted due to the lack of electricity. The majority of the participants discussed how the hurricane delayed their schedules mastectomies and other treatment (e.g., chemotherapy and radiotherapy), which led to a postponement of their treatment by months. It was discussed by some participants how with the upcoming potential rescheduling of their cancer treatment, they still show hesitation to initiate the treatment due to their household situation (e.g., lack of electrical generator and lack of running water). Participants also expressed fear due to the instability of the electric system at the provider’s institution, which would affect their treatment. “Radiotherapy was then scheduled for October. It was the partial mastectomy in August, then in Semptember, the ovaries [oophorectomy], and the radiotherapy in October. Everything was postponed. When [the institution] finnaly had electricity, they called me in October, and I said no, because I work in the metropolitan area and here half the island [shutdown] every day.” — BC participant.
Communication and Coordination. Difficulties reaching out to health care providers or facilities, as well as and lack of electricity where treatment took place, were among the most common codes identified. Participants mentioned the continuous calls and efforts they must conduct (particularly in rural areas); to reach for sufficient phone coverage and contact their providers. On the other hand, it was also discussed how they traveled to the metropolitan area to assess provider’s and treatment facilities’ availability or find out if drugstores were open. Participants mentioned how these barriers led to weeks (sometimes months) in determining and having plans regarding the next steps of their cancer care treatment. A participant discussed how during this waiting period, they relied on natural remedies since “chemotherapy was not available, and my physicians did not have their facilities ready for treatment.” — CRC participant.
Economic Availability. Another barrier identified was economic availability, particularly the discontinuation of the special health coverage. In PR, the government provides special health coverage to patients with specific complex diseases, such as cancer. This special coverage aims to facilitate the management and treatment of these conditions among the population with the government health plan. Special coverage under this provision begins upon confirming a cancer diagnosis and ends after cancer treatment is completed. Some participants argue that the discontinuation of the special coverage after completing the chemotherapy affected follow-up services. “I still haven't done the PET scan because right after [Hurricane] María it was my appointment, […] I finished the chemotherapy, but right after the same day that the last chemotherapy was administered, they removed the service (health coverage) of the catastrophic” — CRC participant.
“I looked for the referrals and even though, then, they called me about a month [later], this time it took a lot to get those referrals, [when] I delivered all the referrals and they told me, you no longer have the catastrophic [special coverage], you do not have the coverage, I had to pay for it and since I didn't have the money, I didn't do it, and it's been a year and I haven't done it yet.” — CRC participant.
Facilitators:
Social Support. Other participants described how they did not have any major complications, qualifying their treatment experience during the hurricane as ‘normal’. One factor that might facilitate this experience was the social support encountered during the emergency, particularly in relation to the assistance in medications storage and transportation to the provider facilities: “my sister had an electric generator, what she did was she took my insulin and put it in the fridge and I kept the bottle [insulin] I was using at the time.”, other participant stated “my daughter was staying at home, so there were 3 cars, there was gasoline. If I had to go get the [chemotherapy] my daughter would take me […], thank God.” — CRC participants.
A group of participants expressed that their experience with cancer treatment during the hurricane was lessened due to their persistence and thrive “Yes, in September was the hurricane, I had therapy the day before the hurricane and in October well I was taking my chemo again. Because I am persistent.” — BR participant.
Service Availability. Some participants identified some health services that were expedited during the emergency that helped alleviate their burden. On September 28th, 2017, the Puerto Rican government announced a waiver for pre-authorizations and medical referrals due to the crisis through an executive order (Carta Normativa CN-2017-221-D)19. This executive order stated that patients could get access to health services before the emergency required referral or pre-authorizations, which expedited the access to services during the disaster. In regards to this order, participants agreed this was a facilitator for their access to care. More so, due to their need to continuously visit their primary care physicians for requesting referrals for needed follow-up treatment, medications, or lab tests. A participant indicated:
“That [referral or pre-authorizations] should be removed. Leave it like that, that don’t require (referral) because you have to get a referral to go to a colonoscopy, you had to look for a referral for ... and sometimes it was not easy, and with this hurricane, one went and there was no problem.” — CRC Participant.
In addition, most participants expressed that access to their prescriptions during the hurricane was facilitated due to the opportunity to get their medications in advance (up to three months’ supply). In most cases, expedited communication with their providers and drug stores before the hurricane hits the island facilitates the rapid dispatch of medications.
Treatment experiences during the hurricane:
Interruption and continuation of cancer treatments. Participants discussed different experiences in the delay in their cancer treatment and how they were resilient and conformed with what was happening with their treatments. Some of the experiences were inherently due to the disaster and the inability to perform surgeries of other treatments “I had surgery on January 20th, 2018. From there, I took 10 chemotherapies again and I am in treatment more or less.” — CRC participant. Difficulties in coordinating the procedure for the supplementary device for the chemotherapy treatment (e.g., port-a-cath or chemo-port) was also mentioned. Other participant described interruptions in their cancer treatment due to clinical complications “[…] On January 24th, I started chemotherapy, it was more or less 6 months that [then] turned into 9, because the moment came when the body could not resist the chemotherapy and instead of doing it every two weeks, I had to do it every three [weeks]. So, I came to finish almost in October or September 2018.” — CRC participant. These complications were added difficulties in their treatment that were exacerbated due to the hurricane: “In the middle of the hurricane, my body began to turn red, red, completely red and I didn’t know what to do, but luckily they explain [me what to do], that [the device] had a little key that closes, and I closed it. But I was completely red. Then the hurricane happened, one laying down all day and without disposition to do anything.” — CRC participant. It was noted that despite these complications, overwhelmingly all the study participants did not consider transferring to other hospitals, institutions or to the US for continuation of their treatment as they express trust in their oncologists and medical team “but I didn’t feel comfortable having to move farther, disarticulate the [established] medical team.” —BC participant, this sentiment was mostly expressed due to their acceptance of the magnitude of the disaster and how it led to these delays and/or complications: “No, because my chemo was every 3 weeks. Every 3 weeks I would take my chemo. It took a few days, but we have to understand that it was because of the hurricane. But I’m done, thank God.” — BC participant
Hurricane-related stress. The study participants discussed many stressors related to Hurricane Maria. A major stressor was the lack of water and electricity for a prolonged period. Due to the lack of electricity, participants discussed the need for being in long and extenuating lines to get gas for the generators; this experience was mentioned only for those participants who had this device at the time of the disaster. The economic burden that the patients overcome due to price increases in food and supplies was also mentioned. This was heightened by the limitation to use the Food Stamp Program card (cupones), as lack of communications impeded the use of the Electronic Benefit Transfer (EBT) cards system.
A surge in the prices of the generators resulted in additional financial strain:“[I] bought a small electric generator, that now cost 3 or 4 hundred dollars, but at that moment (hurricane aftermath) we had to pay 2 thousand dollars, [I] only to use it to [keep] the refrigerator on.” —CRC participant.
Not having electricity or a generator was more difficult for those who needed to keep their medications refrigerated (for example, insulin). Even the heat and mosquitos were stressful when not having at least a fan in their houses. The chores in the house can become overwhelming, and when is a working person with limited time is very difficult to get food and supplies for their homes to maintain their specific diets or bring food to their families. Moreover, overcoming this catastrophe been a cancer patient brought many limitations. Been recent through treatment, participants discussed the restrictions faced preparing for the hurricane. Study participants discussed hurdles in placing the shutters, making the long gas lines, going back to work, and completing the house chores.
When participants were asked about their reflections about the things most stressful about the hurricanes and their aftermath, participants reflected how the delay of treatment for their diagnosis was not stressful, as it was the stressors associated with the hurricane itself. “I would say that, comparatively, the most stressful for me, but has nothing to do with me, the most stressful was seen other families without homes…” — CRC participant. Similarly, when a participant was asked if the possibility of a delay in the treatment was stressful, she answered: “No, because since I had a long time in conversation with the doctors, well I said, a bit more of waiting, because right now with the hurricane I can do nothing. That (delay of treatment) was not stressful.” — BC participant.